We are thrilled to share an exciting milestone for our community: the HIE Community Research Registry has officially enrolled its very first family at Colorado Children’s Hospital.
This marks the beginning of a groundbreaking effort to better understand the long-term impacts of Hypoxic-Ischemic Encephalopathy (HIE), improve care, and drive innovation in research. For too long, families impacted by HIE have been underrepresented in neonatal and pediatric neurology research. This registry changes that by creating a direct pathway for families to share their experiences, outcomes, and needs in a structured and meaningful way.
This is more than just a step forward—it is a huge milestone in the shared commitment to centering families in the research process from the very beginning. Every story and every data point collected through this registry helps shape a future where care and treatment options are better informed, more equitable, and truly reflective of the HIE community.
It has been a goal of Hope for HIE's families since the inception of the online support community in 2010 to not just participate in research, but to drive it forward.
The HIE Community Research Registry is a groundbreaking project designed to bring the voices and experiences of families directly into the heart of research on Hypoxic-Ischemic Encephalopathy (HIE).
Think of the registry as a bridge between families and science. Families impacted by HIE can join by completing surveys about their health, development, and lived experiences. This information is then shared—securely and ethically—with researchers to help them better understand HIE and improve care.
This project has been supported by dedicated funding to build the first-ever community-driven registry for HIE in a pilot phase. The pilot includes working with two researchers at two different children's hospitals: Dr. Danielle Barber at Colorado Children's Hospital, and Dr. Zach Vesoulis at WashU/St. Louis Children's Hospital.
It represents a major step forward in ensuring that research includes—and is shaped by—the people it most affects. The registry has two parts: a community-inputted research registry and a link to an individuals deidentified electronic medical record (EMR), where participants control the information shared, and can also port it to other registries like for epilepsy. Because this is built in partnership with the Cerebral Palsy Research Network, families can also participate in MyCP, eventually having the capability to link the two.
This pilot phase is to show a proof of concept meaning that the study team can show that it is feasible to capture the data in both arms of the registry, and link them through a common research ID.
By partnering with the CP Research Network, this fills a unique need for both organizations, supported also by important work with the Newborn Brain Society. HIE is a risk factor for CP, and the CP Research Network is moving early detection work forward. Their very successful research registry model allows for efficiency in the build, and a more comprehensive data set to work with and understand for families and researchers. And, when it comes to ethical data management, security and handling, the CP Research Network has this set up and in place, working with an academic-based data center and its Institutional Review Board, not a third-party company that could sell and exploit data.
While it's not available to join outside of the pilot yet, we anticipate the global HIE community will be able to sign up in 2026!
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